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Background: Fentanyl test strips (FTS) are lateral flow immunoassay strips designed for detection of ng/mL levels of fentanyl in urine. In 2021, the US Centers for Disease Control and the Substance Abuse and Mental Health Administration stated that federal funds could be used for procurement of FTS for harm reduction strategies approved by the government such as drug checking. The market for FTS has expanded rapidly in the US and Canada. However, there is no regulatory oversight by either government to ensure proper function of FTS that are being marketed for drug checking. Main body: Many brands of FTS have rapidly entered the harm reduction market, creating concerns about the reproducibility and accuracy of their performance from brand to brand and lot to lot. Some examples are provided in this Comment. Similar problems with product quality were observed in the mid 2000's when lateral flow immunoassays for malaria were funded in many countries and again in 2020, when COVID-19 tests were in huge demand. The combination of high demand and low levels of regulation and enforcement led some manufacturers to join the goldrush without adequate field testing or quality assurance. We argue that the harm reduction community urgently needs to set a lot checking program in place. A set of simple protocols for conducting the tests and communicating the results have been developed, and are described in the following Perspectives paper in this issue. Conclusion: In the absence of governmental regulation and enforcement, the harm reduction community should implement a FTS lot checking program. Based on previous experience with the malaria diagnostic lot checking program, this inexpensive effort could identify products that are not suitable for harm reduction applications and provide valuable feedback to manufacturers. Dissemination of the results will help harm reduction organizations to ensure that FTS they use for drug checking are fit for the purpose. [ABSTRACT FROM AUTHOR]

Background: Popular perception of people who sell drugs is negative, with drug selling framed as predatory and morally reprehensible. In contrast, people who use drugs (PWUD) often describe positive perceptions of the people who sell them drugs. The "Satellite Sites" program in Toronto, Canada, provides harm reduction services in the community spaces where people gather to buy, use, and sell drugs. This program hires PWUD-who may move into and out of drug selling-as harm reduction workers. In this paper, we examine the integration of people who sell drugs directly into harm reduction service provision, and their practices of care with other PWUD in their community., Methods: Data collection included participant observation within the Satellite Sites over a 7-month period in 2016-2017, complemented by 20 semi-structured interviews with Satellite Site workers, clients, and program supervisors. Thematic analysis was used to examine practices of care emerging from the activities of Satellite Site workers, including those circulating around drug selling and sharing behaviors., Results: Satellite Site workers engage in a variety of practices of care with PWUD accessing their sites. Distribution of harm reduction equipment is more easily visible as a practice of care because it conforms to normative framings of care. Criminalization, coupled with negative framings of drug selling as predatory, contributes to the difficultly in examining acts of mutual aid and care that surround drug selling as practices of care. By taking seriously the importance for PWUD of procuring good quality drugs, a wider variety of practices of care are made visible. These additional practices of care include assistance in buying drugs, information on drug potency, and refusal to sell drugs that are perceived to be too strong., Conclusion: Our results suggest a potential for harm reduction programs to incorporate some people who sell drugs into programming. Taking practices of care seriously may remove some barriers to integration of people who sell drugs into harm reduction programming, and assist in the development of more pertinent interventions that understand the key role of drug buying and selling within the lives of PWUD.

Background: Indigenous communities in Canada face significant challenges with intergenerational trauma, which manifests in substance use disorders. There is consensus that connecting treatment approaches to culture, land, community, and spiritual practices is a pathway to healing trauma and substance use disorders for Indigenous peoples. Indigenous residential addiction treatment programs have been established as the primary intervention to provide healing for Indigenous peoples with substance use disorders and intergenerational trauma. However, there is limited evidence demonstrating the effectiveness of these programs. In collaboration with the Benbowopka Treatment Centre, this paper describes a study protocol which aims to evaluate the effectiveness of blending Indigenous Healing Practices and Seeking Safety for the treatment of Indigenous patients with intergenerational trauma and substance use disorders. Methods: We will conduct a pre/post Quasi Experimental Community trial, to compare historical treatment outcomes for patients following the implementation of Indigenous Healing and Seeking Safety. We will conduct quantitative and qualitative analyses to understand the differences before and after the intervention is implemented. The pre- Indigenous Healing and Seeking Safety intervention study window will span from 2013 to 2016; n = 343, and the post-Indigenous Healing and Seeking Safety intervention study window from 2018 to 2020; n > 300. All participants will be enrolled in the Benbowopka residential treatment for the first time during the study periods. All data will be anonymized at the time of data entry. Propensity matching will be undertaken for patient characteristics, including sex/gender, age, and substance use type. Results and conclusions: The study findings could be used to inform intergenerational trauma and substance use disorders residential treatment programming for Indigenous communities across Canada. Our work will contribute to the field of community-based intergenerational trauma and substance use disorders programming by addressing objectives that consider: (a) the patient perspective, (b) the program perspective, and (c) the community perspective. The study findings may validate an innovative approach for evaluating the effectiveness of residential addiction treatment and particularly the effective and appropriate care for Indigenous patients with intergenerational trauma and substance use disorders. [ABSTRACT FROM AUTHOR]

Background: Ongoing legal and social discrimination, and stigmatization of people with lived experience of drug use (PWLE) continues to contribute to overdose-related deaths in Canada. The involvement of PWLE working in harm reduction services has proven effective in decreasing drug-related harms among PWLE; however, there exist unintended negative impacts. PWLE working in harm reduction services risk overextending themselves beyond employment parameters (e.g., emotional labor) with few systems in place (e.g., employment advocacy) for support. While meaningful participation of PWLE in harm reduction programs is critical to addressing the overdose crisis, their labor in Canada's overdose response commands further investigation and recognition. This paper examines some of the benefits and negative aspects of working in harm reduction among PWLE. Methods: Fifty qualitative surveys were completed by PWLE working in harm reduction services from across Canada at the National 2018 Stimulus conference held in Edmonton, Alberta. The surveys focused on the benefits and negatives of 'peer' employment and recommendations for organizational transformation through short answer written sections. Surveys were analyzed thematically using NVivo, informed by critical perspectives on substance use, with attention to key re-occurring themes on employment equity. Results: While participants described multiple benefits of working in harm reduction services, such as the valuing of their expertise by fellow 'peers,' growing skill sets, countering stigma, and preventing overdose deaths, issues of workplace equity were significantly identified. Stigma, tokenism, workplace discrimination, including power and pay inequities, as well as lack of worker compensation and benefits were identified as key factors persisting in the everyday experiences of participants. Conclusion: Continued exposure to stigma, workplace discrimination, and/or power imbalances, combined with the impact of high stakes employment (e.g., dealing with overdose deaths), can have significant consequences for PWLE working in harm reduction, including burn out. Policy recommendations include large-scale structural changes that address inequities of hierarchical 'peer' employment for PWLE, including increased leadership roles for diverse PWLE, pay equity and benefits, unionization, as well as more supportive working environments attentive to the intersecting social-structural factors (poverty, criminalization, racism, gendered violence) impacting the everyday lives of PWLE working in harm reduction. [ABSTRACT FROM AUTHOR]

Background: The COVID-19 pandemic had a disproportionate impact on the health and wellbeing of people who use drugs (PWUD) in Canada. However less is known about jurisdictional commonalities and differences in COVID-19 exposure and impacts of pandemic-related restrictions on competing health and social risks among PWUD living in large urban centres. Methods: Between May 2020 and March 2021, leveraging infrastructure from ongoing cohorts of PWUD, we surveyed 1,025 participants from Vancouver (n = 640), Toronto (n = 158), and Montreal (n = 227), Canada to describe the impacts of pandemic-related restrictions on basic, health, and harm reduction needs. Results: Among participants, awareness of COVID-19 protective measures was high; however, between 10 and 24% of participants in each city-specific sample reported being unable to self-isolate. Overall, 3–19% of participants reported experiencing homelessness after the onset of the pandemic, while 20–41% reported that they went hungry more often than usual. Furthermore, 8–33% of participants reported experiencing an overdose during the pandemic, though most indicated no change in overdose frequency compared the pre-pandemic period. Most participants receiving opioid agonist therapy in the past six months reported treatment continuity during the pandemic (87–93%), however, 32% and 22% of participants in Toronto and Montreal reported missing doses due to service disruptions. There were some reports of difficulty accessing supervised consumption sites in all three sites, and drug checking services in Vancouver. Conclusion: Findings suggest PWUD in Canada experienced difficulties meeting essential needs and accessing some harm reduction services during the COVID-19 pandemic. These findings can inform preparedness planning for future public health emergencies. [ABSTRACT FROM AUTHOR]

Background: Graphic Health Warnings (GHWs) on cigarette packages were first introduced in Canada in 2001 and will become mandatory in the US as of January 2022. While previous studies have evaluated the impacts of GHWs, the data used in these studies have several shortcomings. The objective of this paper was to investigate the likely impact of such warnings in the US based upon the experience of Canada using hitherto unexplored monthly cigarette sales data, and to explore if alternative approaches involving risk-reduced products might be more successful in reducing smoking. Methods: We used quasi-experimental segmented regression and difference-in-differences analyses. Data on monthly sales (i.e., shipments) of cigarettes from Canadian manufacturers to Canadian retailers during 1995–2005 were obtained from Statistics Canada. Results: We found that GHWs did not have a significant impact on the sales of cigarettes in Canada. We propose an alternative type of graphical health messaging that actively combines information on how to quit with the legally required messaging. The novelty of the proposal is that it is incentive compatible for the supply side of the market and if adopted in several states, the measure could be tested by using a suitable treatment–control design. Conclusions: Our findings imply that we should not expect any notable decline in sales or consumption as a result of implementation of GHWs in the US. The main impact of GHWs will be to add to the anti-smoking culture that has grown steadily over several decades, and this may impact smoking in the longer term. [ABSTRACT FROM AUTHOR]

Background: Harm reduction (HR) is a critical response to the pronounced toxicity deaths being experienced in Canada. HR providers report many benefits of their jobs, but also encounter chronic stress from structural inequities and exposure to trauma and death. This research study sought to quantify the emotional toll the toxicity emergency placed on HR providers (Cycle One; 2019). Study objectives were later expanded to determine the impact of the ongoing toxicity as well as the pandemic's impact on well-being (Cycle Two; 2021). Methods: Standardized measures of job satisfaction, burnout, secondary traumatic stress, and vulnerability to grief were used in an online national survey. Open-ended questions addressed resources and supports. HR partners across Canada validated the findings and contributed to alternative interpretations and implications. Results: 651 respondents in Cycle One and 1,360 in Cycle Two reported moderately high levels of job satisfaction; they reported finding great meaning in their work. Yet, mean levels of burnout and secondary traumatic stress were moderate, with the latter significantly increasing in Cycle Two. Reported vulnerability to grief was moderate but increased significantly during COVID. When available, supports lacked the quality necessary to respond to the complexities of HR workers' experiences, or an insufficient number of sessions were covered through benefits. Respondents shared that their professional quality of life was affected more by policy failures and gaps in the healthcare system than it was by the demands of their jobs. Conclusion: Both the benefits and the strain of providing harm reduction services cannot be underestimated. For HR providers, these impacts are compounded by the drug toxicity emergency, making the service gaps experienced by them all the more critical to address. Implications highlight the need for integration of HR into the healthcare system, sustainable and reliable funding, sufficient counselling supports, and equitable staffing models. Support for this essential workforce is critical to ensuring the well-being of themselves, the individuals they serve, and the health of the broader healthcare system. [ABSTRACT FROM AUTHOR]

Introduction: Unregulated supply of fentanyl and adulterants continues to drive the overdose crisis. Mobile Overdose Response Services (MORS) are novel technologies that offer virtual supervised consumption to minimize the risk of fatal overdose for those who are unable to access other forms of harm reduction. However, as newly implemented services, they are also faced with numerous limitations. The aim of this study was to examine the facilitators and barriers to the adoption of MORS in Canada. Methods: A total of 64 semi-structured interviews were conducted between November 2021 and April 2022. Participants consisted of people who use substances (PWUS), family members of PWUS, health care professionals, harm reduction workers, MORS operators, and members of the general public. Inductive thematic analysis was used to identify the major themes and subthemes. Results: Respondents revealed that MORS facilitated a safe, anonymous, and nonjudgmental environment for PWUS to seek harm reduction and other necessary support. It also created a new sense of purpose for operators to positively contribute to the community. Further advertising and promotional efforts were deemed important to increase its awareness. However, barriers to MORS implementation included concerns regarding privacy/confidentiality, uncertainty of funding, and compassion fatigue among the operators. Conclusion: Although MORS were generally viewed as a useful addition to the currently existing harm reduction services, it's important to monitor and tackle these barriers by engaging the perspectives of key interest groups. [ABSTRACT FROM AUTHOR]

Objectives: Fentanyl has contributed to a sharp rise in the toxicity of the unregulated drug supply and fatal overdoses in Canada. It has also changed injection practices. Injection frequency has increased as a result and so has equipment sharing and health-related risks. The aim of this analysis was to explore the impact of safer supply programs on injection practices from the perspective of clients and providers in Ontario, Canada. Methods: The data set included qualitative interviews with 52 clients and 21 providers that were conducted between February and October 2021 across four safer supply programs. Interview excerpts discussing injection practices were extracted, screened, coded and then grouped into themes. Results: We identified three themes, each theme corresponding to a change in injection practices. The first change was a decrease in the amount of fentanyl used and a decrease in injection frequency. The second change involved switching to injecting hydromorphone tablets instead of fentanyl. Finally, the third change was stopping injecting altogether and taking safer supply medications orally. Conclusion: Safer supply programs can contribute to reducing injection-related health risks in addition to overdose risks. More specifically, they have the potential to address disease prevention and health promotion gaps that stand-alone downstream harm reduction interventions cannot address, by working upstream and providing a safer alternative to fentanyl. [ABSTRACT FROM AUTHOR]

Background: As the overdose crisis in Canada continues to escalate in severity, novel interventions and programs are required. Safer Supply programs offer pharmaceutical-grade medication to people who use drugs to replace and decrease harms related to the toxic illicit drug supply. Given the paucity of research surrounding these programs, we sought to better understand the experience of being part of a Safer Supply program from the perspective of current participants. Methods: We completed semi-structured interviews and surveys with Safer Supply participants in Ottawa, Canada. Interviews were audio-recorded, transcribed, and analyzed thematically. Descriptive statistics were used to report survey data. Results: Participants most commonly discussed Safer Supply benefits. This included programs offering a sense of community, connection, hope for the future, and increased autonomy. Participants also described program concerns, such as restrictive protocols, inadequate drugs, and diversion. Conclusions: Our research demonstrated that participants found Safer Supply to be effective and impactful for their substance use goals. While participants did discuss concerns about the program, overall, we found that this is an important harm reduction-based program for people who use drugs in the midst of the overdose crisis. [ABSTRACT FROM AUTHOR]

Background: Harm reduction services that employ or are operated by people who use drugs are an effective means of mitigating overdose risks and other drug-related harms. However, stereotypes portraying people who use criminalized drugs as incapable caregivers persist. This is especially true for women who use drugs, and to a greater extent racialized women, who are characterized as having diverged from traditional ideals of womanhood as a result of drug-user stigma and the intersections of gender- and class-based and racist stereotypes. In an effort to identify and understand how women who use drugs practise care through harm reduction, we explored the experiences of women accessing a low-threshold supervised consumption site exclusively for women (transgender and non-binary inclusive) in Vancouver, Canada. Methods: Data were drawn from research conducted from May 2017 to June 2018 exploring women's experiences accessing the supervised consumption site during an overdose crisis. Data included forty-five semistructured interviews with women recruited from the site, analysed thematically to explore practices of care through harm reduction. Findings: Participants reported engaging in both formal and informal care. Acts of care included interventions that both aligned with and deviated from conventional understandings of care practices, including overdose reversal and education, overdose supervision/care, and assisted injection. Conclusion: The boundary between formal and informal harm reduction care is fluid. Women who use drugs engage in harm reduction across these borders with acts of care that align with or fill the gaps in current harm reduction services in order to meet the needs of drug-using communities, challenging negative stereotypes of women who use drugs. However, these caregiving practices can increase risks to care providers' physical, mental, and emotional health and wellness. Increased financial, social, and institutional supports, including safer supply, assisted injection, and community resources, are needed to better support women as they continue to engage in harm reduction care. [ABSTRACT FROM AUTHOR]

Background: Reducing harms of youth substance use is a global priority, with parents identified as a key target for efforts to mitigate these harms. Much of the research informing parental responses to youth substance use are grounded in abstinence and critiqued as ineffective and unresponsive to youth contexts. Parental provision of substances, particularly alcohol, is a widely used approach, which some parents adopt in an attempt to minimize substance use harms; however, research indicates that this practice may actually increase harms. There is an absence of research exploring youth perspectives on parental approaches to substance use or the approaches youth find helpful in minimizing substance use-related harms. Methods: This paper draws on interviews with youth aged 13–18 (N = 89) conducted within the Researching Adolescent Distress and Resilience (RADAR) study in three communities in British Columbia, Canada. An ethnographic approach was used to explore youth perspectives on mental health and substance use within intersecting family, social, and community contexts. This analysis drew on interview data relating to youth perspectives on parental approaches to substance use. A multisite qualitative analysis (MSQA) was conducted to examine themes within each research site and between all three sites to understand how youth perceive and respond to parental approaches to substance use in different risk environment contexts. Results: Within each site, youths' experiences of and perspectives on substance use were shaped by their parents' approaches, which were in turn situated within local social, geographic, and economic community contexts. Youth descriptions of parental approaches varied by site, though across all sites, youth articulated that the most effective approaches were those that resonated with the realities of their lives. Zero-tolerance approaches were identified as unhelpful and unresponsive, while approaches that were aligned with harm reduction principles were viewed as relevant and supportive. Conclusions: Youth perspectives illustrate that parental approaches to substance use that are grounded in harm reduction principles resonate with young people's actual experiences and can support the minimization of harms associated with substance use. Evidence-based guidance is needed that supports parents and young people in adopting more contextually responsive harm reduction approaches to youth substance use. [ABSTRACT FROM AUTHOR]

Background: The dual COVID-19 and overdose emergencies amplified strain on healthcare systems tasked with responding to both. One downstream consequence of the pandemic in the USA and Canada was a surge in drug overdoses resulting from public health-restricted access to services and an increasingly toxic unregulated drug supply. This study aimed to describe changes implemented by programs prescribing pharmaceutical alternatives to the drug supply during the early stages of the COVID-19 pandemic. Methods: An environmental scan used surveys and qualitative interviews with service providers across Canada to examine pharmaceutical alternative prescribing practices and programs before and during the pandemic. This study summarized the nature, frequency, and reasons for pandemic-driven service delivery changes using directed content analysis, counts, and thematic analysis. Results: Eighty-two of the 103 participating sites reported 1193 unique changes in physical space (368), client protocols (347), program operations (342), ancillary services (127), and staffing (90). Four qualitative themes describing the reasons for these changes emerged, namely (1) decreasing risk of COVID-19 infection; (2) decreasing risk of overdose; (3) prioritizing acute care of COVID-19 patients; and (4) improving client access to treatment. Conclusions: While most changes were aimed at decreasing risk of COVID-19 infection, some were found to be at odds with the measures needed to combat the overdose crisis; others met dual objectives of decreased risk of both overdose and infection. Further research should examine which changes should be kept or reversed once COVID-19-related public health measures are lifted. [ABSTRACT FROM AUTHOR]

Background: While there is robust evidence for strategies to reduce harms of illicit drug use, less attention has been paid to alcohol harm reduction for people experiencing severe alcohol use disorder (AUD), homelessness, and street-based illicit drinking. Managed Alcohol Programs (MAPs) provide safer and regulated sources of alcohol and other supports within a harm reduction framework. To reduce the impacts of heavy long-term alcohol use among MAP participants, cannabis substitution has been identified as a potential therapeutic tool. Methods: To determine the feasibility of cannabis substitution, we conducted a pre-implementation mixed-methods study utilizing structured surveys and open-ended interviews. Data were collected from MAP organizational leaders (n = 7), program participants (n = 19), staff and managers (n = 17) across 6 MAPs in Canada. We used the Consolidated Framework for Implementation Research (CFIR) to inform and organize our analysis. Results: Five themes describing feasibility of CSP implementation in MAPs were identified. The first theme describes the characteristics of potential CSP participants. Among MAP participants, 63% (n = 12) were already substituting cannabis for alcohol, most often on a weekly basis (n = 8, 42.1%), for alcohol cravings (n = 15, 78.9%,) and withdrawal (n = 10, 52.6%). Most MAP participants expressed willingness to participate in a CSP (n = 16, 84.2%). The second theme describes the characteristics of a feasible and preferred CSP model according to participants and staff. Participants preferred staff administration of dry, smoked cannabis, followed by edibles and capsules with replacement of some doses of alcohol through a partial substitution model. Themes three and four highlight organizational and contextual factors related to feasibility of implementing CSPs. MAP participants requested peer, social, and counselling supports. Staff requested education resources and enhanced clinical staffing. Critically, program staff and leaders identified that sustainable funding and inexpensive, legal, and reliable sourcing of cannabis are needed to support CSP implementation. Conclusion: Cannabis substitution was considered feasible by all three groups and in some MAPs residents are already using cannabis. Partial substitution of cannabis for doses of alcohol was preferred. All three groups identified a need for additional supports for implementation including peer support, staff education, and counselling. Sourcing and funding cannabis were identified as primary challenges to successful CSP implementation in MAPs. [ABSTRACT FROM AUTHOR]

Background: Harmful gambling is a complex issue with diverse antecedents and resulting harms that have been studied from multiple disciplinary perspectives. Although previous bibliometric reviews of gambling studies have found a dominance of judgement and decision-making research, no bibliometric review has examined the concept of "harm" in the gambling literature, and little work has quantitatively assessed how gambling research priorities differ between countries. Methods: Guided by the Conceptual Framework of Harmful Gambling (CFHG), an internationally relevant framework of antecedents to harmful gambling, we conducted a bibliometric analysis focusing on research outputs from three countries with different gambling regulatory environments: Canada, Australia, and New Zealand. Using a Web of Science database search, 1424 articles published from 2008 to 2017 were retrieved that could be mapped to the eight CFHG factors. A subsample of articles (n = 171) containing the word "harm" in the title, abstract, or keywords was then drawn. Descriptive statistics were used to examine differences between countries and trends over time with regard to CFHG factor and harm focus. Results: Psychological and biological factors dominate gambling research in Canada whereas resources and treatment have received more attention in New Zealand. A greater percentage of Australia and New Zealand publications address the gambling environment and exposure to gambling than in Canada. The subset of articles focused on harm showed a stronger harms focus among New Zealand and Australian researchers compared to Canadian-authored publications. Conclusions: The findings provide preliminary bibliometric evidence that gambling research foci may be shaped by jurisdictional regulation of gambling. Countries with privately operated gambling focused on harm factors that are the operators' responsibility, whereas jurisdictions with a public health model focused on treatment and harm reduction resources. In the absence of a legislated requirement for public health or harm minimisation focus, researchers in jurisdictions with government-operated gambling tend to focus research on factors that are the individual's responsibility and less on the harms they experience. Given increased international attention to gambling-related harm, regulatory and research environments could promote and support more diverse research in this area. [ABSTRACT FROM AUTHOR]

Background: In Canada, funding, administration, and delivery of health services-including those targeting people who use drugs-are primarily the responsibility of the provinces and territories. Access to harm reduction services varies across jurisdictions, possibly reflecting differences in provincial and territorial policy commitments. We examined the quality of current provincial and territorial harm reduction policies in Canada, relative to how well official documents reflect internationally recognized principles and attributes of a harm reduction approach. Methods: We employed an iterative search and screening process to generate a corpus of 54 provincial and territorial harm reduction policy documents that were current to the end of 2015. Documents were content-analyzed using a deductive coding framework comprised of 17 indicators that assessed the quality of policies relative to how well they described key population and program aspects of a harm reduction approach. Results: Only two jurisdictions had current provincial-level, stand-alone harm reduction policies; all other documents were focused on either substance use, addiction and/or mental health, or sexually transmitted and/or blood-borne infections. Policies rarely named specific harm reduction interventions and more frequently referred to generic harm reduction programs or services. Only one document met all 17 indicators. Very few documents acknowledged that stigma and discrimination are issues faced by people who use drugs, that not all substance use is problematic, or that people who use drugs are legitimate participants in policymaking. A minority of documents recognized that abstaining from substance use is not required to receive services. Just over a quarter addressed the risk of drug overdose, and even fewer acknowledged the need to apply harm reduction approaches to an array of drugs and modes of use. Conclusions: Current provincial and territorial policies offer few robust characterizations of harm reduction or go beyond rhetorical or generic support for the approach. By endorsing harm reduction in name, but not in substance, provincial and territorial policies may communicate to diverse stakeholders a general lack of support for key aspects of the approach, potentially challenging efforts to expand harm reduction services. [ABSTRACT FROM AUTHOR]

Background: A community-based research (CBR) approach is critical to redressing the exclusion of women—particularly, traditionally marginalized women including those who use substances—from HIV research participation and benefit. However, few studies have articulated their process of involving and engaging peers, particularly within large-scale cohort studies of women living with HIV where gender, cultural and linguistic diversity, HIV stigma, substance use experience, and power inequities must be navigated. Methods: Through our work on the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS), Canada's largest community-collaborative longitudinal cohort of women living with HIV (n = 1422), we developed a comprehensive, regionally tailored approach for hiring, training, and supporting women living with HIV as Peer Research Associates (PRAs). To reflect the diversity of women with HIV in Canada, we initially hired 37 PRAs from British Columbia, Ontario, and Quebec, prioritizing women historically under-represented in research, including women who use or have used illicit drugs, and women living with HIV of other social identities including Indigenous, racialized, LGBTQ2S, and sex work communities, noting important points of intersection between these groups. Results: Building on PRAs' lived experience, research capacity was supported through a comprehensive, multi-phase, and evidence-based experiential training curriculum, with mentorship and support opportunities provided at various stages of the study. Challenges included the following: being responsive to PRAs' diversity; ensuring PRAs' health, well-being, safety, and confidentiality; supporting PRAs to navigate shifting roles in their community; and ensuring sufficient time and resources for the translation of materials between English and French. Opportunities included the following: mutual capacity building of PRAs and researchers; community-informed approaches to study the processes and challenges; enhanced recruitment of harder-to-reach populations; and stronger community partnerships facilitating advocacy and action on findings. Conclusions: Community-collaborative studies are key to increasing the relevance and impact potential of research. For women living with HIV to participate in and benefit from HIV research, studies must foster inclusive, flexible, safe, and reciprocal approaches to PRA engagement, employment, and training tailored to regional contexts and women's lives. Recommendations for best practice are offered. [ABSTRACT FROM AUTHOR]

Background: Marginalized communities often attract more than their share of research. Too often, this research benefits researchers disproportionately and leaves such communities feeling exploited, misrepresented, and exhausted. The Downtown Eastside (DTES) neighborhood of Vancouver, Canada, has been the site of multiple public health epidemics related to injection drug use as well as the site of much community-led resistance and struggle that has led to the development of cutting-edge harm reduction interventions (e.g., North America's first supervised injection facility, Insite) and a strong sense of community organization. This background has made the DTES one of the most heavily researched communities in the world. Amidst ongoing experiences of unethical or disrespectful research engagement in the neighborhood, a collaboration between local academic researchers and community representatives developed to explore how we could work together to encourage more respectful, community-responsive research and discourage exploitative or disrespectful research. Methods: We developed a series of six weekly workshops called "Research 101." These workshops brought together approximately 13 representatives from peer-based organizations in the DTES with a variety of experiences with research. Research 101 created space for community members themselves to discuss the pitfalls and potential of research in their neighborhood and to express community expectations for more ethical and respectful research. Results: We summarized workshop discussions in a co-authored "Manifesto for Ethical Research in the Downtown Eastside." This document serves as a resource to empower community organizations to develop more equitable partnerships with researchers and help researchers ground their work in the principles of locally developed "community ethics." Manifesto guidelines include increased researcher transparency, community-based ethical review of projects, empowering peer researchers in meaningful roles within a research project, and taking seriously the need for reciprocity in the research exchange. Conclusions: Research 101 was a process for eliciting and presenting a local vision of "community ethics" in a heavily researched neighborhood to guide researchers and empower community organizations. Our ongoing work involves building consensus for these guidelines within the community and communicating these expectations to researchers and ethics offices at local universities. We also describe how our Research 101 process could be replicated in other heavily researched communities. [ABSTRACT FROM AUTHOR]